
Parents receiving a prenatal diagnosis of alobar holoprosencephaly (HPE) often experience uncertainty regarding the pregnancy prognosis. There is little known about how best to counsel and support families receiving the diagnosis. This study explored parental experiences and wishes after receiving a prenatal diagnosis of alobar HPE. Eight mothers who received a prenatal diagnosis of alobar HPE between 2013 and 2019 participated in the study. Parental expectations were based on information conveyed during prenatal counselling. Religious and personal beliefs, perceived suffering, and provider prognostication contributed to parent decisions and goals of care. Patients receiving a prenatal diagnosis of alobar HPE desire access to balanced prenatal counselling about prognosis, morbidity, and mortality. Providers should explore values and beliefs that contribute to parents' care goals and offer appropriate information and referrals.
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